advocacy is hard….

Googled a website today that was instrumental in helping ME survive my daughter’s illness, 8 years ago. My last couple attempts to log in were met with failure so I thought I’d see if I could figure out what was going on. Google sent me to a list of articles and restaurants (?) and, surprisingly, a blog written by the founder of another organization that set me back years during the recovery stage of my daughter’s illness.. Weird.

Long story short, and I think I have written about it on this blog somewhere, I was asked to become a board member of an organization working in the field of my daughters illness. Asked after MANY long conversations and emails. The founding Exec. Director was stepping down and I applied, on a whim. Im one of those people who wants to pay it forward, and since we had been helped by so many when our daughter was struggling, I thought this might be the opportunity to step it up and be a force. WRONG. So, anyway, we talked and talked and talked. They ultimately chose another applicant, but called to ask me to take on another role, sort of a face for the organization. Someone who could speak with parents, the press, the former exec., the new exec. Great gig, right? WRONG.

My husband and I planned on making the trip to DC for their National Conference, I bought a new suit — took a day off work and drove down. After signing in, with a wonderful lady who knew my name and seemed excited to see me, I wandered around for about a half hour, introducing myself, unsure of what or where my place was — feeling like I had stumbled into a Sorority Mixer that I wasn’t really invited to. Finally the new Exec. Director approached and told me “don’t introduce yourself as a board member, the members are getting offended.” Huh? “There are people on the board who don’t know about this decision, people who have worked with us for a while, who are unhappy, trying to figure out who you are.” HUH? Wouldn’t the business meeting the night before have been a good time to tell them about me or the role you had in mind for me?

Needless to say, this did not end well. We stayed the day, listened to the self congratulatory speeches about all the organization had accomplished, watched the new Exec. Director be introduced — Couldn’t get out of there fast enough. I remember my husband’s face as he tried to gauge my disappointment, tried to say the right thing. I had been “removed” , belittled and dismissed by people that I thought shared my vision, people I wanted to work alongside. His proclamation? “You don’t need them, bunch of stuck up women”. Gotta love him.

Which leads me back to where this post began. Google led me to a blog entry, written by the former Exec. about another website set up to help people suffering from this illness, and their families. Very similar initiative. The former Exec. had been ‘removed” from this site for a difference of opinion, belief, whatever. Years ago. Apparently her removal was the impetus for starting the new organization. Apparently she feels the former site was detrimental, archaic and giving bad information. Maybe, I don’t know. I don’t think so. The former site had, truly, given me solace and comfort when my daughter was suffering. I could turn to the site and post my feelings, my fears, my challenges, our triumphs. I didn’t fixate on the ads or the promos, didn’t see this organization as promoting themselves as experts, just purveyors of information for you to analyze yourself — I needed moms and dads, brothers and sisters, to listen to, react to and empathize with what we were going through. That is what I got there. No preaching. No “our way or the highway”.

So in her blog she ranted about the horrors of the site and demanded it be taken down or revamped. Sometime in the period of her writing the blog and the time I found the entry, the site had, indeed, been taken down. Because of her feelings? Because of her blog? Doubtful, but who knows. On that former site I had shared information with parents. People had contacted me, comforted me — given me advice and led me to resources that , I believe, helped our family survive.

And yet, the other site couldn’t stand the presence of their existence. Ironic, right?. She described her hurt at being removed from the original site, the pain it caused. I offer up, as a comparison, the pain this group of women caused me when they dismissed me , revoked their offer to work ( for free, obviously) with them. They missed out on something good. Im good at this, this advocacy gig. I am working to better the lives of women, to eliminate racism, to promote health and joy and empowerment. Your loss, dude. look in the mirror.

This retiree, who ,is actually a restartee, is getting tired…. I am, surprisingly, not 22 anymore. Hell, Im not even 42 anymore….my mind is still sharp, my creativity level is still high, I am stimulated by the challenge and strategy needed to do the job I have taken on, but the hours in the day just dont allow me the time to do what i need to do.

Im slowing down. damn it. tasks take longer, organization takes more thought. And at 6:00 when I get home, i am dog tired.

The drag of it is, I dont have to work. I have a decent retirement income, we have savings and “plans” that will get us through the “golden years”, but I really really really believe in what we are doing at my job. My heart is made for service and it gives me joy . In the 8 1/2 months Ive been on this job we have accomplished great things, built the program, built our reputation, helped people. So, I dont want to stop, or quit. or even slow down, i just need a few more hours in every day so that I can do my Job and see the grandbabies, go to the mall, meet a friend for lunch, have dinner with my husband, go to church, go to the beach…

This night, exactly 8 years ago, was probably the worst night of my life. worst. my baby, deeply entrenched in illness, came as close as anyone could ever come, to losing her fight for life. And she was fighting. Fighting me, fighting her dad, fighting herself. But this night, tonight, i feel none of that fear, that all encompassing terror that comes from the inability to make a difference — I feel peace. Triumphant peace, as for the first time in 8 years I didnt need to see her, to touch her, to hold her, to know that she is all right. It seems, finally, that we are both healed.

So, I retired 2 years ago this month. went back to work part time the very next day…..then a year later found the perfect fulltime gig == great job, great people, strong mission…..good stuff.

But, yesterday, the job interfered with the life. Family situation that I needed to deal with, right in the middle of preparation for an important presentation. Juggle. Family wins, of course. So I took care of that, and have the privilege of being able to telecommute, so did some work last night to catch up.

And this morning, it continues. Needed by family for a few hours. Supervisor excellent, understands, all good. But, do I ? Do I want to be in that place where you have to decide whether to spend time with the grandbabies or the office? Do I want to do 8 hours a day behind a desk or at meetings? Or do I want to sit in the backyard watching the kids play….

time will tell. I dont do anything halfway, so it will be a conscious decision, for sure. Time will tell.

what a day!!!!! Everyone , EVERYONE i came into contact with today either had a bad morning, a stressful afternoon or appeared to be losing their mind….is it a full moon???? Is the earth falling off its axis? Is there some bad mojo floating around? Man, if tomorrow goes like this Im going to bed and staying there…

Did your mom have a mammogram yesterday? Call her, ask her how it went, offer to do the healthy breast dance with her or to sit with her while she waits for the results. Let her know you remember the skinned knees, ear aches, toothaches, bruised egos that she walked you through. The phone calls the night before you had a big test in college, the trips to the store for just the right interview outfit. You call when you need a babysitter, or a couple bucks, you call when your job or your spouse or your child is making you rethink your whole life plan, you call when you need firewood or to borrow the truck. You call when you need a recipe or a craft supply. Call your mother and ask her how the mammogram went. Tell her you love her, and that either way — you’re there. Call me. Im home.

So, how about all those parents who choose to not have their children vaccinated go live somewhere where they can’t spread the illnesses their kids catch to all the children whose parents did have their children vaccinated and cant spread their illnesses to all those children with autoimmune diseases that make them especially susceptible to the diseases those “choosing” parent’s children carry, and cant spread their diseases to the infants whose parents haven’t been able to make the “choice” yet — or to all the children with leukemia or a myriad of other diseases that make them susceptible to your choice. Or to the pregnant mothers who don’t really know if their moms had them vaccinated when they were kids…
It kind of reminds me of second hand smoke or drinking and driving. Yes, you can choose to kill yourself, or to leave your child exposed to illness that generations before you have seen take children from their parents arms, or disabled for life — but damn it, you don’t get to choose to expose my grandchildren to your koolaid.